Start the hard conversations early: Planning for dementia’s changing needs

Caregivers who’ve been there say the best time to talk about late-stage care is long before you need it.

Anyone who has cared for a loved one with dementia knows that the goalposts keep moving. The level of care someone needs changes as the disease progresses, and no single solution fits every family. That was the message in a recent Alzheimer’s Association support group for current and former caregivers of people with Lewy Body Dementia (LBD).

Not every caregiver in the group followed the same path, but the same themes kept coming up. Guilt over the choices you make is common. Waiting too long to make care decisions almost always leads to harder ones later.

Alzheimer’s disease accounts for 60% to 80% of dementia cases. LBD, the second-most common form, is also incurable and affects more than a million Americans. The Association supports individuals and families facing all forms of dementia. This group is led by Deb Wells, a former Association staff member, a Colorado chapter board member, and caregiver for her late husband, who was diagnosed with LBD in his 50s.

The planning should start sooner than you think

The meeting was meant to focus on end-of-life considerations. Members ranged from people new to LBD caregiving to those whose loved ones died years ago. They kept returning to steps they had taken early, or wished they had.

Denial can get in the way. One participant who cares for her father with LBD said her mother has been reluctant to discuss next steps since his diagnosis. That reluctance is understandable, but group members agreed that putting off the conversation tends to leave families making major decisions in the middle of a crisis.

Ask: “What do you know about Lewy body disease?”

Several group members offered one question for any assisted living community you’re considering: “Tell me what you know about Lewy Body Disease.”

The question matters because not all dementias are alike. An approach that works for Alzheimer’s, frontotemporal dementia, or vascular dementia may not work for someone with LBD, and vice versa. LBD is often mistaken for Alzheimer’s early on, but it has its own core symptoms:

• ·Changes in thinking and reasoning
• Fluctuating cognition that resembles delirium
• Recurrent, well-formed visual hallucination
• REM sleep behavior disorder, in which a person acts out dreams
• Spontaneous parkinsonism, including slowness of movement, resting tremor, or rigidity

A care team that can speak knowledgeably about these symptoms is far more likely to provide appropriate care.

Steps to take now

For those facing a loved one’s recent or progressing dementia diagnosis, the support group offered several suggestions:

1. Learn how your loved one’s type of dementia differs. Ask how LBD (or whichever form your loved one has) differs from Alzheimer’s, and how those differences should shape the care they receive.
2. Open the conversation with family, even if it’s uncomfortable. If a spouse or relative isn’t ready, keep coming back to it gently. Don’t wait for a crisis.
3. Vet care communities for dementia-specific knowledge. Ask directly what staff know about your loved one’s type of dementia before you commit.
4. Get professional guidance. The professional staff of the Alzheimer’s Association Helpline (800-272-3900) is available 24/7 at no charge to families to help respond to questions about appropriate care for their loved one, or to direct family members to resources in the community. That information is also available online at the Association’s Community Resource Finder, including contacts for local support groups.
5. Speak up if care falls short. Don’t be afraid to contact state or local authorities if your loved one isn’t getting proper care. Options include local area agencies on aging and the state ombudsman program for long-term care. In the metro Denver area, the area agency on aging is DRCOG (303-480-6700); the state ombudsman office is a division of Colorado Department of Human Services (303-862-3524).
6. Settle end-of-life wishes early, including brain or organ donation. Group members stressed that making these decisions ahead of time spares you from facing them when there is more pressure to make an immediate decision (www.braindonorproject.org).
7. Go easy on yourself. Guilt over the choices you make is common. Connecting with others who’ve been through it can help.