Archives for January 2013

Alzheimer’s Disease and Signs of Money Problems

(NIH) People with Alzheimer’s disease often have problems managing their money. In fact, money problems may be one of the first noticeable signs of the disease. Early on, a person with Alzheimer’s may be able to perform basic tasks, such as paying bills, but he or she is likely to have problems with more complicated tasks, such as balancing a checkbook. As the disease gets worse, the person may try to hide financial problems to protect his or her independence. Or, the person may not realize that he or she is losing the ability to handle money matters.

Signs of Money Problems

Look for signs of money problems such as trouble counting change, paying for a purchase, calculating a tip, balancing a checkbook, or understanding a bank statement. The person may be afraid or worried when he or she talks about money. You may also find:

  • Unpaid and unopened bills
  • Lots of new purchases on a credit card bill
  • Strange new merchandise
  • Money missing from the person’s bank account

A family member or trustee (someone who holds title to property and/or funds for the person) should check bank statements and other financial records each month to see how the person with Alzheimer’s disease is doing and step in if there are serious concerns. This can protect the person from becoming a victim of financial abuse or fraud.

Take Steps Early

Many older adults will be suspicious of attempts to take over their financial affairs. You can help the person with Alzheimer’s feel independent by:

  • Giving him or her small amounts of cash or voided checks to have on hand
  • Minimizing the spending limit on credit cards or having the cards cancelled
  • Telling the person that it is important to learn about finances, with his or her help

To prevent serious problems, you may have to take charge of the person’s financial affairs through legal arrangements. It’s important to handle the transfer of financial authority with respect and understanding.

You can get consent to manage the person’s finances via a durable power of attorney for instances, preferably while the person can still understand and approve the arrangement. You can also ensure that the person finalizes trusts and estate arrangements.

Guard Against Financial Abuse and Fraud

People with Alzheimer’s may be victims of financial abuse or scams by dishonest people. Sometimes, the person behind the scam is a “friend” or family member. Telephone, e-mail, or in-person scams can take many forms, such as:

  • Identity theft
  • Get-rich-quick offers
  • Phony offers of prizes or home or auto repairs
  • Insurance scams
  • Health scams such as ads for unproven memory aids
  • Threats

Look for signs that the person with Alzheimer’s may be a victim of financial abuse or fraud:

  • Signatures on checks or other papers don’t look like the person’s signature.
  • The person’s will has been changed without permission.
  • The person’s home is sold, and he or she did not agree to sell it.
  • The person has signed legal papers (such as a will, power of attorney, or joint deed to a house) without knowing what the papers mean.
  • Things that belong to you or the person with Alzheimer’s, such as clothes or jewelry, are missing from the home.

If you think a person with Alzheimer’s may be the victim of a scam, contact your local police department. You can also contact the State consumer protection office or Area Agency on Aging office.

Citation

http://www.nlm.nih.gov/medlineplus/alzheimerscaregivers.html#cat57

U.S. National Library of Medicine U.S. Department of Health and Human Services National Institutes of Health

 

Alzheimer’s Disease and Changes in Intimacy and Sexuality

(NIH) Alzheimer’s disease can cause changes in intimacy and sexuality in both a person with the disease and the caregiver. The person with Alzheimer’s may be stressed by the changes in his or her memory and behaviors. Fear, worry, depression, anger, and low self-esteem (how much the person likes himself or herself) are common. The person may become dependent and cling to you. He or she may not remember your life together and feelings toward one another. The person may even fall in love with someone else.

You, the caregiver, may pull away from the person in both an emotional and physical sense. You may be upset by the demands of caregiving. You also may feel frustrated by the person’s constant forgetfulness, repeated questions, and other bothersome behaviors.

Most caregivers learn how to cope with these challenges, but it takes time. Some learn to live with the illness and find new meaning in their relationships with people who have Alzheimer’s.

How to Cope with Changes in Intimacy

Most people with Alzheimer’s disease need to feel that someone loves and cares about them. They also need to spend time with other people as well as you. Your efforts to take care of these needs can help the person with Alzheimer’s to feel happy and safe. It’s important to reassure the person that:

  • You love him or her
  • You will keep him or her safe
  • Others also care about him or her

The following tips may help you cope with your own needs:

  • Talk with a doctor, social worker, or clergy member about these changes. It may feel awkward to talk about such personal issues, but it can help.
  • Talk about your concerns in a support group.
  • Think more about the positive parts of the relationship.
  • Get more information. See “Intimacy, Sexuality, and Alzheimer’s Disease: A Resource List,” www.nia.nih.gov/alzheimers/intimacy-sexuality-and-alzheimers-diseaseresource-list.

How to Cope with Changes in Sexuality

The well spouse/partner or the person with Alzheimer’s disease may lose interest in having sex. This change can make you feel lonely or frustrated. You may feel that:

  • It’s not okay to have sex with with someone who has Alzheimer’s.
  • The person with Alzheimer’s seems like a stranger.
  • The person with Alzheimer’s seems to forget that the spouse/partner is there or how to make love.

Here are some tips for coping with changes in sexuality:

  • Explore new ways of spending time together.
  • Focus on other ways to show affection, such as snuggling or holding hands.
  • Try other nonsexual forms of touching, such as massage, hugging, and dancing.
  • Consider other ways to meet your sexual needs.

A person with Alzheimer’s disease may have side effects from medications that affect his or her sexual interest. He or she may also have memory loss, changes in the brain, or depression that affect his or her interest in sex.

Here are some tips for coping with changes in sexuality:

  • Explore new ways of spending time together.
  • Focus on other ways to show affection, such as snuggling or holding hands.
  • Try other nonsexual forms of touching, such as massage, hugging, and dancing.
  • Consider other ways to meet your sexual needs.

Hypersexuality

Sometimes, people with Alzheimer’s disease are overly interested in sex. This is called “hypersexuality.” The person may masturbate a lot and try to seduce others. These behaviors are symptoms of the disease and don’t always mean that the person wants to have sex.

To cope with hypersexuality, try giving the person more attention and reassurance. You might gently touch, hug, or use other kinds of affection to meet his or her emotional needs. Some people with this problem need medicine to control their behaviors. Talk to the doctor about what steps to take.

Citation

http://www.nlm.nih.gov/medlineplus/alzheimerscaregivers.html#cat57

U.S. National Library of Medicine U.S. Department of Health and Human Services National Institutes of Health

 

Alzheimer’s Disease and Art Therapy

(Alzheimer’s Foundation of America) Art therapy, whether done in a community setting or at home, provides an enriched environment that can excite the imagination of individuals with dementia.

When Alzheimer’s disease strips individuals of verbal skills, this recreational activity provides an alternative means by which they can express themselves in a non-threatening and comfortable way. And it can also help individuals recover the use of motor skills in the same manner as physical rehabilitation.

Moreover, art therapists informally report the effectiveness of art making. Some individuals crawl out of their shells. Others, unable to communicate through words, express delight, appear more relaxed or exhibit less behavioral problems. Together in a group setting, participants often develop a newfound sense of camaraderie.

For families, art offers a viable activity that can bring family members together via a new channel of expression especially when words no longer work. It might be just the interaction for younger children who are frightened by the illness.

How to be most effective?

Keep it simple. Painting and sculpting are activities most individuals with dementia can accomplish.

Evoke memories. Suggest drawing the family farm, a snowman or other images that are familiar or can evoke childhood memories.

Play it safe. Only use materials that would be harmless if swallowed. Check all labels and only buy paints and other materials that are non-toxic. Homemade clay and paint are preferable to store-bought versions because they can be made with ingredients that are edible.

Select stimulating materials. Individuals in mid-to-late stage dementia often respond best to brightly colored paints and organic materials such as homemade clay. Other objects like cardboard candy boxes, balls of yarn, old photograph albums, papier-mache and pieces of material also go over well.

Create a comfortable setting. Play music in the background—soothing, but not distracting. Provide lighting that is adequate, but not too bright.

Be positive. Aim for no-failure activities. In addition to being positive reinforcements, compliments, such as “terrific” and “great job,” can help keep individuals focused.

Talk about the artwork. If your loved one is still verbal, ask about the artwork or a favorite color. Open-ended questions will tap into memories, spark conversations and encourage socialization. Use your knowledge about the individual, such as past hobbies, former professions and family life.

Start a gallery. Hanging up artwork, whether on the refrigerator of your home or the hallway of a long-term care facility, offers more opportunities for socialization and reminiscence. Plus, it goes a long way toward making the artist feel good.

Contributed by Elizabeth Cockey, a Baltimore-based art therapist and consultant to healthcare facilities about the utilization of art therapy

For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers. Click here or call 866.AFA.8484. Real People. Real Care.

Citation

http://www.alzfdn.org/EducationandCare/art_therapy.html

©Alzheimer’s Foundation of America Website 2010. All rights reserved.

 

Association between Tobacco Smoke Exposure and Dementia

Occup Environ Med 2013;70:63-69 doi:10.1136/oemed-2012-100785

Association between environmental tobacco smoke exposure and dementia syndromes

Ruoling Chen,Kenneth Wilson,Yang Chen, Dongmei Zhang, Xia Qin,Meizi He, Zhi Hu,Ying Ma, John R Copeland

Abstract

Objectives

Environmental tobacco smoke (ETS) has a range of adverse health effects, but its association with dementia remains unclear and with dementia syndromes unknown. We examined the dose–response relationship between ETS exposure and dementia syndromes.

Methods

Using a standard method of GMS, we interviewed 5921 people aged ≥60 years in five provinces in China in 2007–2009 and characterised their ETS exposure. Five levels of dementia syndrome were diagnosed using the Automated Geriatric Examination for Computer Assisted Taxonomy instrument. The relative risk (RR) of moderate (levels 1–2) and severe (levels 3–5) dementia syndromes among participants exposed to ETS was calculated in multivariate adjusted regression models.

Results

626 participants (10.6%) had severe dementia syndromes and 869 (14.7%) moderate syndromes. Participants exposed to ETS had a significantly increased risk of severe syndromes (adjusted RR 1.29, 95% CI 1.05 to 1.59). This was dose-dependently related to exposure level and duration.

The cumulative exposure dose data showed an adjusted RR of 0.99 (95% CI 0.76 to 1.28) for >0–24 level years of exposure, 1.15 (95% CI 0.93 to 1.42) for 25–49 level years, 1.18 (95% CI 0.87 to 1.59) for 59–74 level years, 1.39 (95% CI 1.03 to 1.84) for 75–99 level years and 1.95 (95% CI 1.34 to 2.83) for ≥100 level years.

Significant associations with severe syndromes were found in never smokers and in former/current smokers. There were no positive associations between ETS and moderate dementia syndromes.

Conclusions

ETS should be considered an important risk factor for severe dementia syndromes. Avoidance of ETS may reduce the rates of severe dementia syndromes worldwide.

Citation

http://oem.bmj.com/content/70/1/63

Copyright © 2013 by the BMJ Publishing Group Ltd.

 

Cognitive Stimulation to Improve Cognitive Functioning in Dementia

Cochrane Database Syst Rev. 2012 Feb 15;2:CD005562. doi: 10.1002/14651858.CD005562.pub2.

Cognitive stimulation to improve cognitive functioning in people with dementia.

Woods B1, Aguirre E, Spector AE, Orrell M.

Abstract

People with dementia and their caregivers are often advised that ‘mental exercise’ may be helpful in slowing down the decline in memory and thinking experienced by many people with dementia.

This review examined the evidence for one form of mental exercise, described as cognitive stimulation. This involves a wide range of activities that aim to stimulate thinking and memory generally, including discussion of past and present events and topics of interest, word games, puzzles, music and practical activities such as baking or indoor gardening.

Typically this is carried out by trained staff with a small group of four or five people with dementia for around 45 minutes at least twice a week. Family caregivers have also been trained to provide cognitive stimulation to their relative on a one-to-one basis.

This review included 15 trials with a total of 718 participants. The findings suggested that cognitive stimulation has a beneficial effect on the memory and thinking test scores of people with dementia. Although based on a smaller number of studies, there was evidence that the people with dementia who took part reported improved quality of life. They were reported to communicate and interact better than previously. No evidence was found of improvements in the mood of participants or their ability to care for themselves or function independently, and there was no reduction in behaviour found difficult by staff or caregivers. Family caregivers, including those who were trained to deliver the intervention, did not report increased levels of strain or burden.

The trials included people in the mild to moderate stages of dementia and the intervention does not appear to be appropriate for people with severe dementia. More research is needed to find out how long the effects of cognitive stimulation last and for how long it is beneficial to continue the stimulation. Involving family caregivers in the delivery of cognitive stimulation is an interesting development and merits further evaluation.

Background

Cognitive stimulation is an intervention for people with dementia which offers a range of enjoyable activities providing general stimulation for thinking, concentration and memory usually in a social setting, such as a small group.

Its roots can be traced back to Reality Orientation (RO), which was developed in the late 1950s as a response to confusion and disorientation in older patients in hospital units in the USA. RO emphasised the engagement of nursing assistants in a hopeful, therapeutic process but became associated with a rigid, confrontational approach to people with dementia, leading to its use becoming less and less common.

Cognitive stimulation is often discussed in normal ageing as well as in dementia. This reflects a general view that lack of cognitive activity hastens cognitive decline. With people with dementia, cognitive stimulation attempts to make use of the positive aspects of RO whilst ensuring that the stimulation is implemented in a sensitive, respectful and person-centred manner.

There is often little consistency in the application and availability of psychological therapies in dementia services, so a systematic review of the available evidence regarding cognitive stimulation is important in order to identify its effectiveness and to place practice recommendations on a sound evidence base.

Objectives

To evaluate the effectiveness and impact of cognitive stimulation interventions aimed at improving cognition for people with dementia, including any negative effects.

Search Methods

The trials were identified from a search of the Cochrane Dementia and Cognitive Improvement Group Specialized Register, called ALOIS (updated 6 December 2011). The search termsused were: cognitive stimulation, reality orientation, memory therapy, memory groups, memory support, memory stimulation, global stimulation, cognitive psychostimulation. Supplementary searches were performed in a number of major healthcare databases and trial registers to ensure that the search was up to date and comprehensive.

Selection Criteria

All randomised controlled trials (RCTs) of cognitive stimulation for dementia which incorporated a measure of cognitive change were included.

Data Collection and Analysis

Data were extracted independently by two review authors using a previously tested data extraction form. Study authors were contacted for data not provided in the papers. Two review authors conducted independent assessments of the risk of bias in included studies.

Main Results

Fifteen RCTs were included in the review. Six of these had been included in the previous review of RO. The studies included participants from a variety of settings, interventions that were of varying duration and intensity, and were from several different countries. The quality of the studies was generally low by current standards but most had taken steps to ensure assessors were blind to treatment allocation.

Data were entered in the meta-analyses for 718 participants (407 receiving cognitive stimulation, 311 in control groups). The primary analysis was on changes that were evident immediately at the end of the treatment period. A few studies provided data allowing evaluation of whether any effects were subsequently maintained.

A clear, consistent benefit on cognitive function was associated with cognitive stimulation (standardised mean difference (SMD) 0.41, 95% CI 0.25 to 0.57). This remained evident at follow-up one to three months after the end of treatment.

In secondary analyses with smaller total sample sizes, benefits were also noted on self-reported quality of life and well-being (standardised mean difference: 0.38 [95% CI: 0.11, 0.65]); and on staff ratings of communication and social interaction (SMD 0.44, 95% CI 0.17 to 0.71).

No differences in relation to mood (self-report or staff-rated), activities of daily living, general behavioural function or problem behaviour were noted. In the few studies reporting family caregiver outcomes, no differences were noted. Importantly, there was no indication of increased strain on family caregivers in the one study where they were trained to deliver the intervention.

Authors’ Conclusions

There was consistent evidence from multiple trials that cognitive stimulation programmes benefit cognition in people with mild to moderate dementia over and above any medication effects. However, the trials were of variable quality with small sample sizes and only limited details of the randomisation method were apparent in a number of the trials.

Other outcomes need more exploration but improvements in self-reported quality of life and well-being were promising. Further research should look into the potential benefits of longer term cognitive stimulation programmes and their clinical significance.

Citation

Copyright © 1999–2012 John Wiley & Sons, Inc. All Rights Reserved.

National Center for Biotechnology Information U.S. National Library of Medicine

 

Alzheimer’s Recreational Activities: Creative Storytelling

(Alzheimer’s Foundation of America) Creative storytelling is catching on as a therapeutic tool for individuals with Alzheimer’s disease—and their families. It is increasingly being used in adult day programs and other group settings.

Pleased with the results, experts say families can adapt this technique for use in their home environments as well. Storytelling sparks memories, encourages verbalization and promotes self-esteem among those with dementia, according to healthcare professionals.

“Inevitably, storytelling is about memories, but it opens the rules to include imagination and to create something new that accepts who they are and where they are in the moment. That’s a great thing for families,”

noted Anne Basting, founder of the Milwaukee-based National TimeSlips Project. Renya Larson, a TimeSlips facilitator and the associate director of the National Center for Creative Aging, Brooklyn, NY, calls TimeSlips a “potent” tool designed for individuals in the middle to late stages of Alzheimer’s disease who can no longer communicate through conventional methods.

Participants can comfortably incorporate gestures, sounds and facial expressions into the story. For individuals still in the earlier stages, Larson suggested,

“Creativity may be threatening. They want to hold on to the true stories they still have.”

However, it may be possible to adjust the program by including more reminiscence and current events.

How-to of Creative Storytelling

  • Create the right scene. Eliminate background noise, like TV and radio, and set up in a dedicated space. Prepare a sketchpad, brightly colored markers and an image. Do storytelling during the “magic hour” for higher cognitive functioning—9:30 am to 11:30 am or right after lunch. Maintain eye contact.
  • Choose pictures carefully. The more unrealistic the picture, the better. Large, colorful pictures that are odd or include animals mimicking what people do spark creativity. While you might be inclined to use family photos, they raise the possibility of right and wrong answers, and a sense of failure. Instead, try a picture that triggers something from the past, but that is not too close so that it prompts the person to focus on remembering.
  • Learn questioning techniques. The wording of the questions is even more critical than the images. Questions that elicit yes and no, or direct answers will not work. Inquiries like “Who is this?” or “What is this?” are outlawed. These create a pressure cooker for an individual with dementia, and set them up for a wrong answer. Only open-ended questions are encouraged, such as: “What should we call the person?” “Where are they going?” “What could this be?” “What is going on here?”
  • Be persistent. If the method does not click one day, try again another day. It might take a lot of cajoling to get the person to respond. Engaging other family members in storytelling can stimulate more responses from the person with dementia, bringing the process closer to a group experience.
  • Keep a stiff upper lip. The whole idea is to open up the thought process. Responses may be negative, incorrect or resurrect family baggage. Individuals often voice their contrariness or use sexual or bathroom language. Still, echo whatever is said and make that the story. Otherwise, if you frown upon their answers, they will be afraid to participate. It is important to validate comments-however shocking, and move on.
  • Integrate music. Sometimes music will prompt responses even among individuals who are no longer verbal. Bring in music by asking open-ended questions, such as, “What might she be singing?” or “What music does the character like?”
  • Go with the flow. You do not have to write the story down if you feel it will distract from enjoying the moment. Consider using a tape recorder or involving a youngster as the scribe.
  • Redefine “story.” Creative storytelling does not have to have a beginning, middle and end, nor does it have to make sense. For example, a character can have three names and words can be nonsensical. Most of all, remember this is creative storytelling. Noted Basting: “It can be scary for people to let go of literal language. But if you can follow to where the person is, you can find a whole new way to connect to your loved one.”

Note: Experts caution that creative storytelling can be more challenging one-on-one than in a group setting. Families will need to jump over some hurdles, but, with that done, this technique can be successfully adapted to the home—and can be very rewarding all-around.

For more information, connect with the Alzheimer’s Foundation of America’s licensed social workers. Click here or call 866.AFA.8484. Real People. Real Care.

Citation

http://www.alzfdn.org/EducationandCare/storytelling.html

©2015 Alzheimer’s Foundation of America. All rights reserved

 

Home Modifications for People with Dementia and Barriers to Implementation

J Hous Elderly. 2011 January 1; 25(3): 258–273.
doi: 10.1080/02763893.2011.595612

A Descriptive Study of Home Modifications for People with Dementia and Barriers to Implementation

Gesine Marquardt, Dr.-Ing., Deirdre Johnston, MB, BCh., Betty S. Black, Ph.D., Ann Morrison, Ph.D., Adam Rosenblatt, M.D., Constantine G. Lyketsos, M.D., and Quincy M. Samus, Ph.D.

Abstract

This study describes home environmental features, safety issues, and health-related modifications in a community dwelling sample of 82 elderly people with dementia. Main barriers to the accessibility of the homes were steps, both inside and outside the house. The majority of the caregivers had made home modifications, which pertained mainly to physical limitations. Home modifications to support cognitive deficits were made to a lesser extent. The main barrier to the implementation of home modifications to accommodate the care recipient’s memory loss was skepticism about their usefulness. Regarding the removal of physical barriers, financial constraints were most frequently mentioned.

Introduction

Aging in place, meaning continuing to reside in one’s home in the community, is a consistent wish and expectation of middle aged and older adults (AARP, 2003). This does not seem to change with the development of dementia, since it is estimated that about 73% of all older adults with dementia are cared for in their own home (Wimo et al., 2007). In 2002, the prevalence of dementia among individuals aged 71 and older was 13.9% and comprised 3.4 million individuals in the USA (Plassmann et al., 2007). With the “graying of America,” these numbers will increase and result in a growing demand for suitable housing. In a recent review, empirical evidence for a relationship between home environments and disability-related outcomes for older adults was identified (Wahl et al., 2009). The presumption that improving home environments enhances functional ability outcomes was also supported. However, inconsistencies in findings across the studies, the limitation to cross-sectional designs and, to some extent, insufficient research quality were critically noted.

A vast array of practical recommendations on how to implement home modifications in the homes of elderly people is available in guide books, leaflets, websites, etc. However, the majority of this guidance does not extend to the care of people with dementia in their homes. An exception is the work by Warner (2000; 2006), which might not be widely known and used by caregivers yet. Dementia specific research on home modifications has been conducted (Gitlin & Corcoran, 1996; Gitlin et al. 2002; Pynoos & Ohta, 1991) and has shown benefits of a dementia-specific adapted environment and the use of assistive devices for both the caregiver and care recipient (Gitlin et al., 2010a; Gitlin et al., 2010b). However, detailed descriptive information on the actual home environment of people with dementia and what modifications are being implemented organically is scarce.

In Maximizing Independence at Home (MIND at Home) Phase 1, a pilot study of the needs of persons with dementia living in their own homes in the community, environmental safety was found to be one of the most prevalent areas of need (Johnston et al., 2011). While some of the environmental interventions associated with positive outcomes in the long term care literature may be applied in home care settings, potential environmental modifications in homes will likely require more creative and lower cost alternatives. To better understand how home environments are being adapted in the context of caring for community-living persons with dementia currently, this study aims to provide a description of home environmental features, safety issues, and health-related modifications observed among a sample of elders with dementia being cared for in a home in the community. Specifically, we aim to describe:

  • common environmental features that present safety issues or barriers to mobility of the home-residing dementia care recipient;
  • care recipients’ behavior, orientation, and risk of adverse events such as falls in the context of the home environment;
  • common home modifications, including use of assistive technology, that caregivers have implemented or would consider implementing in the care recipients’ homes.

Materials and Methods

We report cross-sectional data derived from an ongoing randomized controlled trial, Maximizing Independence (MIND) at Home Phase 2, designed to evaluate the effectiveness of a dementia-oriented care coordination intervention on unmet needs and ability to age in place among a cohort of community-dwelling elders with cognitive disorders. A detailed description of the trial methodology will be forthcoming. In brief, the full sample consists of 303 elders living in one of 28 contiguous zip code areas in North/Northwest Baltimore. Participants were recruited from aging services providers, local public and private social service agencies, community centers and day programs, clinics, and senior housing. Supplemental recruitment notices also appeared in local media sources and recruitment efforts were also made at local community health seminars and fairs to provide background promotion of the study. The inclusion criteria for participants were as follows: (1) participant resided in the identified catchment area, (2) was aged 70+, (3) met DSM-IV-TR criteria for any type of dementia or cognitive disorder not otherwise specified (Cognitive DO NOS), and (4) had a reliable study partner available to serve as a proxy informant (i.e. someone who knows the participant, who interacts with him or her regularly, and is willing to participant in the study). Individuals were excluded if (1) they were non-English speaking, (2) the situation at the time of referral involved a crisis with risk of danger to the individual or others, or (3) medical morbidity or substance use could not be ruled out as a cause for cognitive impairment. The current analytic sample is a subset of this cohort comprised of 82 participants who were enrolled in the study and received in-home assessments between August and December 2009 by a PhD architect trained in home environment assessment (GM).
All study procedures were reviewed and approved by an Institutional Review Board at the Johns Hopkins School of Medicine. Oral consent was obtained from participants in the telephone screening stage and written consent was obtained during the initial in-person visit. In cases where capacity to consent was compromised, consent was obtained from a legally authorized representative (LAR) using the Maryland Health Care Decisions act as a guide, and written or oral assent was obtained from the participant.
The study enrollment process consisted a two-stage screening process for eligibility. First, trained research assistants conducted a 15 minute telephone screening for cognitive impairment using the Telephone Interview for Cognitive Status (TICS) (Brandt et al., 1988) and the Informant Questionnaire for Cognitive Disorders in the Elderly (IQCODE) (Jorm & Jacomb, 1989). Both measures have good reliability and validity (Jorm & Jacomb, 1989; Ferucci et al., 1998). A positive screen was defined as a TICS score of <31 and an IQCODE score of >52. Next, those who screened positive were asked to participate in a comprehensive in-home clinical assessment to determine the presence of dementia or cognitive DO NOS, along with an assessment of 15 dementia-related needs across multiple domains (Black et al., 2008). The clinical assessment team was overseen by a geriatric psychiatrist (DJ) and performed by a research nurse experienced in dementia care. The initial in-home clinical assessment included a narrative medical and neuropsychiatric history, a mental status and neurological exam, and a medication review to determine diagnoses. Information was gathered from the participant, a study partner, and from medical reports, when available. If found eligible, baseline quantitative outcome measures were completed, followed by computer randomization to one of two groups, care coordination or augmented care as usual (control). A written summary evaluation of unmet needs and potential interventions was sent after the randomization to all participants and/or their LAR, and to their primary care providers. Routine follow-up assessments for all participants were completed or planned at 4.5, 9, 13.5, and 18 months by blinded assessors. While interrater reliability was not measured formally, the research team met with the principal investigator weekly to review data collection procedures and discuss questions that arose related to consistency of study procedures and administration of standardized measures. Further, the research team was observed periodically by the principal investigator during study visits.
For the 82 participants in these analyses, home environment was assessed at Baseline (n=57) or at the 9-month study visit (n=25). All 82 home environments were assessed by an architect (GM) experienced in environmental design for dementia, using an assessment developed specifically for this study. The assessment included observation and a simple house plan sketch of the home environment (layout of the rooms, design of the entrance and the interior stairs, implementation of bathroom safety features, presence of excessive furniture and clutter, spatial indications of where falls had occurred), as well as a questionnaire administered to the participant’s caregiver. This 8-item questionnaire included information on environmental modifications that had been made, if caregivers had made these modifications based on consultations with professionals, and whether these modifications were made due to the care recipient’s memory disorder or because of physical health limitations. Also included were questions on the use of spaces, and on behavioral issues such as wandering and wayfinding abilities of the person with dementia. We asked if care recipients were able to find 4 places (bedroom, bathroom, living room/den, kitchen) within the home independently, if they needed some cueing to get there, or had to be taken all the way. Further, caregivers’ wishes for environmental modifications and their perceptions of barriers and facilitators to adapting the environment to the needs of the person with dementia were explored. To assess which modifications caregivers would like to make to the care recipient’s home regardless of financial or spatial constraints, we asked them to “make a wish” and recorded their responses. The home environment walkthrough and questionnaire took approximately twenty minutes to administer.
Of note, all participants had received a visit from the clinical study team during eligibility screening, and some may have received verbal advice on environmental hazards such as the need for reduction of clutter and removal of fall risks, prior to data collection. Also, 25 participants whose homes were assessed at the 9-month MIND at Home visit, had received a written letter of recommendations that may have included advice on environmental hazards. Some of these participants may have also been randomized to the intervention group and thus were receiving ongoing advice on potential home modifications. We specifically asked all participants whether the home modifications they reported were related to advice from the study team and report the results below. Data were analyzed using SPSS 17.0.

Results and Discussion

Among the 82 participants that comprise this sample, 50% lived in single-family homes, 28% in apartments and 22% in townhouses. Participants’ mean age was 84.5 years. The majority (62%) of participants were female. 62% of participants were married, 29% were widowed, 6% divorced and 3% never married. The racial composition of the sample was 77% Caucasian and 23% African American. 73% of the participants lived with a caregiver, 13% lived alone and 13% lived with someone else. The study partners were mainly spouses (44%), or children of the participants (37%). The majority (96%) of the study partners considered themselves to be the participant’s caregiver. All participants met the criteria for dementia with a mean score of 19 on the Mini-Mental Status Examination (MMSE; Folstein et al., 1975) ranging between scores of 0 and 30. Assigning stages of dementia (Perneczky et al., 2006), 44% of the participants (n=36) were in a mild stage of dementia (MMSE score 21 and above), 38% (n=31) in a moderate stage (MMSE score 11–20) and another 17% of the participants (n=14) in a severe stage (MMSE score 0–10).

Identified physical environmental obstacles and safety

Entrance and interior stairs

Steps to get inside the house constituted a major physical obstacle within the sample’s homes. The steps often lacked safety railings. Almost half (44%) of home outdoor steps had no railing at all. Of the remaining homes, 46% (n=28) had a railing on only one side, with only 10% of the steps (n=6) featuring a railing on both sides. In 10% of the homes (n=6) with steps at the front entry, a wheelchair ramp had been incorporated to make the home accessible, and in 8% of the homes (n=5), an evenly leveled rear entry was available.
Stairs that connected different floors in homes formed another major barrier. Only 40% of the homes in the sample (n=33), mainly the apartments, had no interior stairs. In homes that had interior stairs, 29% of all stairs (n=14) were winding and a stair lift was found in 20% (n=10) of homes with steps.

Bathroom Safety

It appeared that modifications to the bathrooms that included either a walk-in shower, handheld showerhead or a shower seat were made in nearly 50% of all homes visited. 57% had grab bars installed. A modified bathroom that featured at least three important safety features – grab bars, a walk-in shower and a shower seat – was found in only 23% (n=19) of homes in the sample. However, these modifications were made with varying quality. In some bathrooms, grab bars and non-skid bathmats were utilized after consultation with a physical or occupational therapist. In others, grab bars from hardware stores were installed to the caregivers’ best knowledge.

Physical barriers to mobility: Furniture and Clutter

Varying amounts of furniture and other items such as stacks of newspapers, boxes etc were observed within homes which may become an obstacle to both the care recipient’s mobility and cognition: To use mobility aids, such as walkers and wheelchairs, adequate space for safe and successful maneuvering is needed (ADA Standards for Accessible Design). Finding items and managing tasks can become very difficult for people with dementia in cluttered homes (Corcoran, 1992). 50% of the homes in the sample (n=41) were rated as being very structured and providing sufficient space for moving about safely. 38% (n=31) were rated as somewhat cluttered but still offered clear paths to move about. Notably, 12% of the homes (n=10) were rated as very cluttered and did not allow for moving safely about the place.

Mobility around the home and fall risk

Moving about the home

Ten percent of the care recipients in this sample always needed personal assistance by a caregiver to move about the home. Another 28% were reported to hold tight to furniture and walls when moving about. However, use of interior railing or grab bars, specifically designed for added stability, was only observed in one home, excluding use in bathroom areas. This modification is rarely addressed in the home modification literature and needs further research and trial. About 40% of all participants used a mobility aid, (i.e. a cane, walker or wheelchair) in or outside the home.

Falls

In this sample, 57% of the care recipients (n=47) reported at least one fall in their home within the last two years. Since extensive research has been conducted on the occurrence falls (such as Stevens et al., 2001; Härlein et al., 2009; Iwarsson et al., 2009), we limited our focus on the places where the falls had happened in the home. Bedrooms accounted for most of the falls (26%), followed by the living room or den (17%) and the bathroom (12%). Another 12% of the reported falls occurred at the entrance or in the hallway near the home entrance, and 11% occurred on steps.

Behavior and Orientation in the Home Environment

Wandering within the home

Wandering behavior is a symptom of dementia, slightly more prevalent in patients with Alzheimer dementia, patients with dementia of longer duration, and patients with more severe dementia (Klein et al., 1999). In this sample, wandering was reported in 12 cases, about 15% of the care recipients. We found no typical routes or any hints on spatial settings that would promote or inhibit wandering. The caregivers seemed to cope well with this behavior. In only two cases were safety concerns expressed and only one caregiver was upset by the wandering.

Wandering away from home

Spatial disorientation and episodes of getting lost are among the symptoms of dementia in the early stages of the disease, when mild cognitive decline first manifests (Rosenberg, Johnston, and Lyketsos, 2006). In familiar settings people with dementia often maintain their ability to find their way about for a long time but episodes of people getting lost and even being fatally injured are repeatedly being reported (Silverstein et al., 2006). Therefore wandering away from home is a threat to the safety of elderly people with dementia living in the community. The prevention of wandering by environmental modifications and other strategies, as well as preparations for a wandering episode is comprehensively addressed in the literature (Silverstein et al., 2006; Warner, 2000; 2006). In this sample, we found that being able to walk outside the home alone as well as being able to return home declines with dementia severity. While in the beginning stages most care recipients still walk outside the home by themselves, the numbers decrease with advancing dementia. Most caregivers were not aware of environmental interventions that could prevent wandering as they are discussed in the literature; such as “hiding” the doorknob by a curtain or adding door chimes as an auditory alert that the door has been opened (Day et al., 2000). However, exit control seemed to become important in the moderate stages of dementia when 39% of caregivers locked the doors or used some kind of auditory alert. In the severe stages when mobility was more impaired, exit control seems to have become less important, with only 21% of caregiver reporting use of some kind of exit control at this point.

Wayfinding and spatial orientation within the home

As expected, wayfinding was related to dementia severity. All care recipients with mild dementia (MMSE >20) were able to find their way unaided. 96% percent of care recipients in moderate stage dementia could find their way unaided. In severe dementia, only 42% of care recipients found their way independently, another 42% needed some cueing and 17% were completely dependent on others for navigation. These findings correspond to those from long term care settings (Marquardt & Schmieg, 2009). However, research there also showed that even in severe dementia the ability to find one’s way can be supported by the nursing home’s architectural design. Future research on home modifications for people with dementia could focus on environmental interventions to enhance wayfinding in severe dementia.

Implementation of home modifications, consultations and wishes

Seventy-two percent of caregivers (n=59) reported that they had made at least one modification to the care recipients’ home, 21% (n= 17) had not made any changes, and 7% of caregivers (n=6) were unable to provide that information. 51% of caregivers (n=30) said they had initiated home modifications, 39% (n=23) followed recommendations on the basis of a consultation from a professional, such as an occupational therapist (OT), a physical therapist (PT), or a recommendation from the MIND at Home study team. 10% could not identify the reason.

Reasons for Home modification implementation

37% of the care givers (n=25) reported they had made no changes to the home to adapt it to the care recipient’s physical limitations. The home modifications implemented in the remaining 42% of homes (n=51) that were ascribed to the care recipients’ physical limitations with the most common modifications made to enhance bathroom safety.
57% of caregivers (n=47) reported that they had made no changes to the home due to the care recipient’s memory loss. The home modifications that were implemented in 36% of the homes (n=29). Use of signs and labels was the most common modification to accommodate the individual’s memory loss.
Regarding the caregiver’s relationship (spouse or child) to the care recipient, there was very little difference in the implementation of home modifications in general, or pertaining to either the physical or cognitive limitations of the care recipient, to be found.

Caregiver wishes for modifications

6% (n=5) did not feel they were in the position to wish for changes, 38% (n=31) had no wish at all, and out of the 56% of caregivers (n=46) with one or more wishes.
>With 67%, caregivers who were children of the care recipient wished more often for modifications to the care recipient’s home than care giving spouses, with 57%. The main wish for a bigger or adapted bathroom was not associated with their relationship and ranked most mentioned in both groups.

Use of Assistive Technology

The use of assistive technologies was very rare. Devices used did not comprise newer technologies but rather established items such as emergency call buttons (26%) and baby monitors (4%).

Acceptance of suggested changes

During the home visits in this study caregivers were asked if they would consider implementing modifications to their home: Whether they would use signs and labels to support the care recipient’s cognition and if they would make changes pertaining to the physical limitations. The strongest objection, as caregivers would think the modification would not be necessary or not helpful, was observed towards the use of signs and labels to support the care recipient’s cognition. Suggestions on modifications pertaining to physical limitations were generally more accepted, but lack of financial resources was often a barrier to their implementation.

Conclusions

Based on data from this sample, physical environmental obstacles are a fairly common safety issue in homes in which elders with dementia are being cared for. The most prevalent physical obstacles observed in these homes were steps, both inside and outside the home and lack of handrails. When considering new building and renovations to existing buildings, this suggests that architects, developers, city planners, etc. should consider the accessibility of homes in their designs as well as mobility within the home. Not only do the elderly benefit from a barrier free design but so do families with small children, using strollers and other equipment. Similarly, inside the homes with more than one floor, the availability of a bathroom on the ground floor, or at least the provision of all necessary fixtures and a floor plan design that allows for the installation of a bathroom at a later point, should be considered.
In addition to changing the structural design, other low cost modifications may be helpful in the care of those with dementia. We noted that misplaced or abundant furniture and clutter presented physical obstacles to moving about as well as possible fall risks. Assuming these are recognized by the caregiver as potential problem issues, relocating and decluttering areas would be a simple, low tech intervention. We also found that over a quarter (28%) of the sample used inanimate objects such as furniture that may not provide the necessary degree of stability for moving about the place. Modifications such as installation of handrailing in hallways and judicious placement of grab bars in rooms beyond the bathroom may be an inexpensive way to increase safety.
In terms of recommendations for modifications, we found that those already in place in the homes often came about as a result of a professional recommendation from an OT or PT. This finding supports the utility of home safety and environmental evaluations as previously addressed in the literature (Mathieson et al., 2001; Stevens et al., 2001). Furthermore, even though our home assessment and questionnaire was targeted toward environmental features and modifications that relate to memory disorders, almost three times more modifications were attributed by caregivers to physical limitations rather than to memory loss. A likely reason for this is the caregiver’s lack of knowledge about the symptoms of dementia and how these differ from physical disability. This lack of awareness is an important point since insight on how impaired cognition changes the way in which one interacts with his/her environment is likely important in choice and, ultimately, the effectiveness of the types of interventions implemented. For instance, a personal emergency response device may be useful in an elder at increased fall risk due to physical disability, but is likely ineffectual in a person with moderate to severe dementia who would forget to activate it in an emergency.

We found that the adoption of assistive technology is largely absent, though a number of interventions are currently marketed for dementia, and range from simple and inexpensive products like door chimes, sensors and alarms to more advanced technologies such as heat sensors and automatic cut-off switches for stoves, telemedicine systems, and fall monitoring systems. Of course, further study of these products is needed to determine their relative value and how they can best match the patient and caregiver needs and abilities. Further research that addresses the barriers to caregivers using assistive technologies is also urgently needed

In general, major barriers towards the implementation of home modification seem to be rooted in caregivers’ acceptance of the suggestions – which they often perceive as “not necessary” or that they “wouldn’t work” in their situation (Sheldon & Teaford, 2002). Another issue that needs further investigation is how to involve the care recipient into the process of modifying the home. About one third of all caregivers reported that the care recipient would react with confusion or irritation to changes within the home. This seems to decrease slightly with the progression of dementia, but it can be hypothesized that home modifications in early stages, implemented in agreement with the care recipient would be the most beneficial. Further research is needed to understand how caregivers perceive and prioritize needs related to the physical environment to alleviate dementia symptoms that will allow for the design of supportive interventions.

Limitations

The generalizability of the findings may be limited as this study reports on a “convenience” sample of participants referred to the MIND at Home Phase 2 study rather than a randomly selected cohort. Their caregivers’ interest in participation in the study could be correlated with a higher awareness of the care recipients’ needs that might lead to more home modifications already implemented or to a greater openness toward the suggested changes. Also, the initial study visit by the MIND at Home team may have resulted in recommendations for environmental interventions regarding some of the issues later assessed in the home environment visit, such as removing fall hazards. Therefore, the number of home modifications implemented in this sample might be higher than in the general population. However, it should be noted that the overall use of home modifications was still quite low.
This study suggests that it is widely known among caregivers that care recipient safety and independence can be supported by modifications to the home. The main interest of the caregivers seemed to be modifications to the bathrooms. The awareness of other possible modifications, especially pertaining to the care recipient’s cognitive limitations, needs to be increased. There also seem to be barriers towards the implementation of home modifications. From the home visits and the discussions with the caregivers we assume that adapting the home to personal deficits means not only to accept them for themselves but also that they become visible for everyone visiting in their home to see. This warrants further research on ways of increasing the acceptance of home modifications by both care givers and care recipients. In general we identified a need for informing caregivers about the possible scope of home modifications.

Citation

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3167170/

National Center for Biotechnology Information, U.S. National Library of Medicine